Rodi\u010dia robia v\u0161etko preto, aby malej bolo lep\u0161ie. \u201eBudeme tu pre \u0148u v\u017edy.\u201c Jedinou cestou s\u00fa intenz\u00edvne rehabilit\u00e1cie. Nikdy nebude hovori\u0165, neuvid\u00ed n\u00e1s, nesprav\u00ed krok, ale aj v\u00a0bezn\u00e1deji existuje n\u00e1dej. Mus\u00ed. \u201ePrijali sme Mi\u0161kin stav. Neo\u010dak\u00e1vame nemo\u017en\u00e9, sme realisti. Ale nechceme \u017eivot s\u00a0dc\u00e9rkou len pre\u017e\u00edva\u0165, ale \u017ei\u0165. Te\u0161i\u0165 sa, smia\u0165 sa. Je tak n\u00e1dhern\u00e1, ke\u010f reaguje na hudbu, uk\u013eud\u0148uje je, ke\u010f jej spievam, ke\u010f ju chyt\u00edm za r\u00fa\u010dku. Viem, pre zdrav\u00fdch samozrejmosti, pre n\u00e1s ale ve\u013ek\u00e9 z\u00e1\u017eitky,\u201c hovor\u00ed stato\u010dn\u00e1 mama \u017daneta.<\/p>\n
Pokroky urobila obrovsk\u00e9. P\u00f4vodne sondovan\u00e1 Mi\u0161ka sa u\u017e nau\u010dila pi\u0165 z\u00a0f\u013ea\u0161ky. Ke\u010f\u017ee pri pacientoch s\u00a0Edwardsov\u00fdm syndr\u00f3mom nefunguje preh\u013atanie a p\u00f4vodne sondovan\u00e1 Mi\u0161ka sa napriek tomu u\u017e nau\u010dila pi\u0165 z\u00a0f\u013ea\u0161ky \u2013 \u0161\u0165astie sa v\u00a0tejto rodine dalo doslova kr\u00e1ja\u0165. \u201eAkoby sa n\u00e1m o\u00a0180 stup\u0148ov zmenil \u017eivot. K\u00a0lep\u0161iemu, samozrejme.\u201c<\/p>\n
\u010eal\u0161ou ve\u013ekou zmenou je fakt, \u017ee Mi\u0161ka sa udr\u017e\u00ed v\u00a0sede. Neposad\u00ed sa s\u00edce sama, ale vydr\u017e\u00ed sedie\u0165 a\u00a0pozera\u0165 sa na svet z\u00a0in\u00e9ho uhla. \u201eTo v\u0161etko je v\u010faka rehabilit\u00e1ci\u00e1m v\u00a0Adeli. Mi\u0161ka n\u00e1m dokazuje, \u017ee chce \u017ei\u0165. Narodila sa bez jedn\u00e9ho o\u010dka, v\u00a0druhom ale mala n\u00e1dor a\u00a0museli jej ho vybra\u0165. Na\u0161e diev\u010datko si toho ve\u013ea vytrpelo, ale d\u00e1va n\u00e1m poc\u00edti\u0165 ka\u017ed\u00fdm d\u0148om, \u017ee sa jej na svete p\u00e1\u010di. \u017de chce \u017ei\u0165. Hocikedy ma sama chyt\u00ed a\u00a0pobozk\u00e1 \u2013 to je najsilnej\u0161\u00ed pocit pre m\u0148a. Neop\u00edsate\u013en\u00fd.\u201c Pre\u010do Adeli? \u201eCel\u00e9 napredovanie na\u0161ej dc\u00e9rky je v\u010faka Adeli. Nem\u00e1me ru\u017eov\u00e9 okuliare, chodi\u0165 nebude, ale m\u00e1me pred sebou ve\u013ek\u00fa m\u00e9tu. Aby sa sama posadila.\u201c<\/p>\n
\u017daneta je s\u00a0Mi\u0161kou na opatrovate\u013eskom, man\u017eel pracuje ako kuri\u00e9r. Sna\u017eia sa u\u0161etri\u0165 \u010do najviac, ale ide to \u0165a\u017eko a\u00a0pomaly. Preto s\u00fa v\u010fa\u010dn\u00ed ka\u017ed\u00e9mu, kto prispeje na potrebn\u00e9 terapie do Adeli pre jedno \u0165a\u017eko sk\u00fa\u0161an\u00e9 milovan\u00e9 diev\u010datko.\u00a0 <\/span>Ktor\u00e9 m\u00e1 zo v\u0161etk\u00e9ho najrad\u0161ej, ke\u010f sa jej mama \u010di ocko dot\u00fdka, smeje sa, ke\u010f na \u0148u rozpr\u00e1vaj\u00fa. A\u00a0najrad\u0161ej v\u00a0noci. Preto\u017ee mal\u00e1 sle\u010dna v\u00a0noci ve\u013ea nesp\u00ed, \u201eod za\u010diatku funguje obr\u00e1tene. Cez de\u0148 si posp\u00ed na etapy a\u00a0v\u00a0noci \u017eije,\u201c smeje sa \u017daneta, ktor\u00e1 sa vlastne u\u017e osem rokov poriadne nevyspala. \u201eZvykla som si. Mne sta\u010dia tri hodiny sp\u00e1nku.\u201c<\/p>\n Z\u00a0cel\u00e9ho srdca rodi\u010dia \u010fakuj\u00fa Bohu, \u017ee Mi\u0161ku maj\u00fa, \u013d\u00fabia ju najviac na svete. Nemaj\u00fa pl\u00e1ny typu kam p\u00f4jdeme na dovolenku, ich snom je by\u0165 s\u00a0Mi\u0161kou. \u201e\u010co najdlh\u0161ie…\u201c\u00a0 <\/span>Te\u0161ia sa v\u017edy na Vianoce, Mi\u0161ke mamka urob\u00ed kr\u00e1sne cop\u00edky, oble\u010die ju do n\u00e1dhern\u00fdch \u0161iat, tancuj\u00fa spolu a\u00a0Mi\u0161ka sa naplno smeje. \u201eTo je v\u017edy n\u00e1\u0161 najkraj\u0161\u00ed viano\u010dn\u00fd dar\u010dek. To n\u00e1m d\u00e1va silu\u00a0 <\/span>a\u00a0chu\u0165 \u00eds\u0165 \u010falej. Bojova\u0165 a\u00a0\u017ei\u0165.\u201c<\/p>","protected":false},"excerpt":{"rendered":" \u201eNie je to \u013eahk\u00fd \u017eivot\u201c, hovor\u00ed \u017daneta. L\u00e1skypln\u00fdm poh\u013eadom sa pritom pozer\u00e1 na svoju Mi\u0161ku. Osemro\u010dn\u00e9 ku\u010derav\u00e9 diev\u010datko jej nikdy nepovie mama. Diev\u010datko nevid\u00ed, nechod\u00ed, ale je obklopen\u00e9 morom l\u00e1sky. Je stredobodom vesm\u00edru pre svojich rodi\u010dov.<\/p>\n Tri mesiace si mama \u017daneta odle\u017eala na rizikovom, preto\u017ee bola podozrivo n\u00edzka v\u00e1ha b\u00e1b\u00e4tka. P\u00f4rod pri\u0161iel v\u00a036. t\u00fd\u017edni a\u00a0Mi\u0161ka v\u00e1\u017eila len 1,60 kila. \u201eBola ve\u013emi mali\u010dk\u00e1, ale to nebol najv\u00e4\u010d\u0161\u00ed probl\u00e9m. U\u017e na poh\u013ead bolo jasn\u00e9, \u017ee na\u0161a dc\u00e9rka je in\u00e1. Absol\u00fatny \u0161ok pri\u0161iel, ke\u010f mi povedali diagn\u00f3zu \u2013 Edwardsov syndr\u00f3m.\u201c Je to z\u00e1va\u017en\u00e1 vroden\u00e1 genetick\u00e1 porucha sp\u00f4soben\u00e1 nadbyto\u010dn\u00fdm 18. chromoz\u00f3mom v bunk\u00e1ch.\u00a0N\u00e1sledkom s\u00fa viacer\u00e9 vroden\u00e9 chyby, n\u00edzka p\u00f4rodn\u00e1 hmotnos\u0165, abnormality tv\u00e1re a kon\u010dat\u00edn, probl\u00e9my s d\u00fdchan\u00edm a jeden\u00edm a nepriazniv\u00e1 progn\u00f3za, pri\u010dom v\u00e4\u010d\u0161ina postihnut\u00fdch det\u00ed nepre\u017eije prv\u00fd rok \u017eivota.\u00a0\u00a0V\u0161etky pr\u00edznaky Mi\u0161ka m\u00e1, ale v\u00a0pre\u017e\u00edvan\u00ed je rekordmankou. V\u00a0lete mala 8 rokov, \u201eoslavu sme si ve\u013emi u\u017eili, je to na\u0161e zlat\u00ed\u010dko, \u017eivot s\u00a0postihnut\u00fdm die\u0165a\u0165om je \u0165a\u017ek\u00fd, bolestiv\u00fd, smutnej\u0161\u00ed, ale napriek tomu je aj kr\u00e1sny. Dc\u00e9rka n\u00e1m d\u00e1va ve\u013ea.\u201c \u017daneta prizn\u00e1va, \u017ee lek\u00e1ri jej ve\u013ek\u00e9 \u0161ance ned\u00e1vali a\u00a0vlastne ani st\u00e1le ned\u00e1vaj\u00fa. \u201eJa viem, \u017ee na\u0161e die\u0165a je ve\u013emi \u0165a\u017ek\u00fd pr\u00edpad, a\u017e tak\u00fd, \u017ee sa vlastne ka\u017ed\u00fd rok mnoh\u00ed, aj lek\u00e1ri, \u010duduj\u00fa, \u017ee e\u0161te \u017eije. V\u017edy ma to extr\u00e9mne zabol\u00ed. Vlastne, hne\u010f v\u00a0p\u00f4rodnici mi navrhli umiestni\u0165 Mi\u0161ku do detsk\u00e9ho domova. Vraj to s\u00a0\u0148ou nezvl\u00e1dnem. To som pred\u00fdchavala ve\u013emi dlho. Pre\u010do by som svoje die\u0165a mala niekam odlo\u017ei\u0165? Preto, \u017ee je hendikepovan\u00e1?\u201c<\/p>","protected":false},"featured_media":168948,"template":"","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"Mi\u0161ka Makulov\u00e1 sa narodila 13.7.2017 s diagn\u00f3zou Edwardsov syndr\u00f3m","_seopress_titles_desc":"Mi\u0161ka Makulov\u00e1 sa narodila 13.7.2017 s diagn\u00f3zou Edwardsov syndr\u00f3m a teda s ve\u013emi nepriazniv\u00fdmi lek\u00e1rskymi progn\u00f3zami. Lek\u00e1ri jej na z\u00e1klade toho, \u010do sa doteraz o d\u013a\u017eke \u017eivota takto hendikepovan\u00fdch det\u00ed vie, predpovedali ve\u013emi skor\u00e9 skonanie, na \u010do pripravovali aj jej rodi\u010dov. D\u00f4vodom malo by\u0165 viacn\u00e1sobn\u00e9 po\u0161kodenie org\u00e1nov, najm\u00e4 chor\u00e9 srdie\u010dko a probl\u00e9my s d\u00fdchan\u00edm. 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